MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Wednesday, 23 December 2009

Just to let you know: I'm not blogging at present - not because I'm too busy, but because I have a monumentally stinking cold, which is keeping both of us awake at night - with my hacking cough - and me fairly antisocial in the day - with this befogging streaming cold. It's not terribly good news with MND as you run the risk of chest infection. So you'll not get any clever comments about the irony of climate change and the present classic British winter. All I'll do is wish you a Joyfilled and PeacefulChristmas, as we celebrate the extraordinary event that transformed history.

Saturday, 19 December 2009

We were delighted to discover that our visitor this weekend, Tony, is addicted to 'Strictly Come Dancing' - which means of course that instead of an evening of polite conversation we'll be able to indulge our Saturday night habit of ignorantly commenting on the merits of the dancing celebrities. Ever since I learned of Ricky Whittle's taking dancing lessons in preparation for the series and especially since Chris Hollins' highly entertaining Charleston, I've been rooting for Chris and Ola - in a passive sort of way (none of this wasting money on phoning). I'm told they're the people's favourite 'because of the journey', whereas Ricky's the judge's favourite because of his skill. Interesting that: reminds me of the phrase, 'not because of works lest any man should boast'.

Meanwhile on a rather different level of significance the fortnight-long UN summit on climate change has come to an end. I suspect the hope of achieving 'a legally binding agreement' at the end was always a pipe dream. With 190+ states wanting to protect their own interests, only the most optimistic idealist could have hoped for a universal agreement. And I've always wondered what sanctions in law would have been imposed on transgressors. So there are some people bemoaning the talks as a complete failure, while the UN Secretary General,Mr Ban told journalists: "It may not be everything we hoped for, but this decision of the Conference of Parties is an essential beginning." Robert Bailey, of Oxfam International, said: "It is too late to save the summit, but it's not too late to save the planet and its people."
I was interested by the quasi-religious terminology he used. Religious fundamentalism is an accusation often made by the climate sceptics, I've noticed. "We're not allowed to question the scientific orthodoxy on the subject," they complain. Well, personally, I agree with Ban Ki-moon in his determination to press on towards something more concrete. It seems to me that having brought China, the USA, Brazil, India and South Africa into the mainstream process was no mean achievement. And it's up to us to keep praying for our political leaders.

Friday, 18 December 2009

Things at home are beginning to shape up for our family Christmas. It's quite a strange feeling, I must say, not being 'in charge' of a parish with three churches (not that I was in charge, I hope) for the first time for twenty years. Not that I'm missing the strain; probably just the power! And also, of course, the community. Anyway we're hoping our neighbours will be coming round on Tuesday for mince pies and mulled wine - which of course means Jane doing the preparations. And she's been dusting down our environmentally friendly artificial Christmas tree, which is now twinkling in the conservatory. And bringing out the crib. And putting up the cards on the trellis in the 'lift room'. And doing the shopping. And wrapping the presents. And... meanwhile I sit and watch, and think of past years when we did such things as a team and of how much is falling on Jane's shoulders now. But she doesn't complain. In fact she says she's enjoying it - and I believe she is. The truth is that we are celebrating the birth of the serving God - and gratitude makes drudgery divine.

Thursday, 17 December 2009

I spent a gloriously miserable afternoon yesterday - thanks, Mary! Or maybe I should say miserably glorious. Jane wisely went out shopping while I finished the book Mary recommended, Sarah Williams' The Shaming of the Strong. It is a magnificent book - vividly written. It begins when Sarah has a scan which reveals that her longed-for third baby has a serious genetic abnormality which would mean it wouldn't survive birth. The medics expected that she would have an abortion, but she and her husband Paul decided against and instead, with all their family, loved the baby Cerian to the end - at a huge cost, physically, socially and spiritually. As you know, MND leaves you susceptible to emotion and at a lot of points I was very moved. All I can say about my weeping is that Jane didn't leave me enough handkerchiefs. And as for my wailing - you'd better ask Jess the dog, as she was the only witness. However if you want an affirmation of the preciousness and value of life - even of the weakest and most 'useless' person - you really ought to read The Shaming of the Strong. It's a beautiful book. By the way, I wasn't the only one who cried on reading it. Why do you think Jane went out?

Saturday, 12 December 2009

We had a knock on the door on Thursday evening. It was the Wantage Silver Band playing carols. We had a couple of verses of While shepherds watched and then a burst of Deck the halls with boughs of holly. It was pleasant having carols played live, rather than the canned musac type you hear so much. The trouble is with double-glazing you couldn't hear the carols; so we kept the door open while they were in the close.

We've not decked our hall yet for a good reason. When I worked on BBC Radio Oxford (actually I did a student attachment there during my ordination training, to be honest), the Sunday morning breakfast show ran a Campaign for a real Advent (CAMRA...). The point of course was to stem the tide of celebrating Christmas too soon. It was a bit like Canute, but I appreciate the sentiment. Of course it's especially hard when schools break up and naturally want to have carol services and nativity plays for their children. Not all do, of course - choosing instead to go down the politically perverse Winter Festival route. I'm glad that my grandchildren have had the opportunity to be an angel and even Mary at a school which definitely hasn't taken Christ out of Christmas. I heard of another production which included a policeman and a penguin. I have a feeling it wasn't about the nativity. Personally I think the waiting (and even some discipline) leading up to Christmas adds to the celebration, and when I was a vicar tried to keep carol services as near the day as was feasible.

Breaking my Advent fast, however, I enjoyed reading these top 3 classic kids' quotes from the school Christmas concert tonight regarding "what Christmas means to me": 1) "Christmas is not just about presents...it's about having fun as well!" 2)"I wake up early on Christmas morning and fill the house with Joy. Then I wake up mum and dad." 3) "I drink some Schloer. It tastes fizzy. That's what Christmas means to me!" Thanks, Ellie.

Thursday, 10 December 2009

you'd like to see my two marching grandchildren with their mum at the Wave march in London on Saturday. I'm immensely proud of them. And love them. I can't see why they weren't interviewed on TV. But that's not important. As Barack Obama has just said, 'We seek a better world for our children and grandchildren.' That's as true about the environment as about peace - for which he's receiving his Nobel prize. It sounds like an interesting discussion of the just war theory worked out in practice in the 21st century. I'd better concentrate. 'The desire for peace is seldom enough.' 'Peace entails sacrifice.' 'We lose ourselves when we compromise the very ideals we fight to defend.' It's quite something having such a thoughtful US President. 'Condemnation (of human rights' abuse) without discussion will do nothing to change the status quo.' Interestingly he's linked peace with the need to preserve the environment. 'No holy war can ever be a just war.' 'Adhering to this law of love - do unto others what you'd have them do to you - has always been the struggle of human nature.' 'Let us reach for the world that ought to be, the spark of the divine that lies within our souls.'

Wednesday, 9 December 2009

Well, isn't that extraordinary? Between Brian and Jane, we've established that the quote, “You have chosen the roughest road, but it leads straight to the hilltops,” actually comes, not from John Bunyan, but from John Buchan's Greenmantle, chapter 1. And yet everywhere on the web you'll find it attributed to Bunyan. HE DIDN'T WRITE IT! He did, however, write the following, when Christian is faced with the Hill Difficulty:
"This hill though high I covet to ascend;
The difficulty will not me offend;
For I perceive the way of life lies here.
Come, pluck up, heart; let's neither faint nor fear" (The Pilgrim's Progress p 41). John Buchan of course is best known as ex-diplomat and writer of 'The Thirty Nine Steps'. He's a bit non-PC for these days - but so, oddly enough, is John Bunyan. But none the worse for that.
Anyway interesting example of internet Chinese whispers it seems! And thank you to detectives Brian and Jane. Now the hunt is on for the comparison between death and birth (Nouwen? Vanier?)

Tuesday, 8 December 2009

Yesterday morning Jane said, 'We must have a session sorting out presents on line.' I agreed. In our marriage it's a joint operation. I sit at the laptop and Jane makes suggestions, and then we look and decide. I don't remember where I read recently a refreshing defence of Christmas presents. You know, there's a sort of guilt about giving someone something nice simply to say, 'I love you.' But actually, if it's done for that reason, it's a beautiful thing. Remember the woman who poured the expensive perfume over Jesus' feet? And think of the world we live in - beautiful, isn't it? Isn't that a gift from the Creator to his children? And isn't Christmas about the most generous gift of all, and our gifts of love to each other can be expressions of thanks for Jesus - if they're given from love, not duty or guilt.

Anyway a few minutes later, we heard on the radio that it was 'Cyber Monday' or Super Monday, the M25 rush-hour of internet shopping. There are three Mondays of heavy shopping in the year, and this was the busiest. We speculated idly and briefly why it might be so, and how we had come to share the herd instinct - as it were, blind. I think we were fairly successful. There are a few things which we will want to buy from local shops which we like to support: such as our excellent Charlton Garden Centre and of course good old Cornerstone.

Brian drew my attention to a late legal challenge to the 'Supreme Court' decision to instruct the DPP to draw up case specific guidelines about assisting suicide. It comes from Alison Davis who has complex disabilities and feels that the DPP's guidelines discriminate against the disabled and terminally ill. She's challenging on the grounds that Lord Justice Phillips later expressed a sympathy for one side which could constitute a bias. (http://www.telegraph.co.uk/news/newstopics/politics/6729832/Assisted-suicide-disabled-campaigner-in-11th-hour-court-challenge.html)
PS Just ONE WEEK for submissions to the DPP. (If you need a link, try this: http://www.ccfon.org/docs/Letter_-_Please_respond_to_DPP_consultation.pdf)

Saturday, 5 December 2009

Today two of my grandchildren, aged 5 and 4, are going on their first public demonstration in London, to do with climate change. So look out for them on the TV reports, with their mum, all wearing blue wigs, I'm told! And it's fair enough it seems to me. It will be their world that really suffers if we don't manage to curb our rampant consumerism. It's a pity, though not surprising, that the East Anglia University email leaks have proved that scientists are not always so objective and 'factual' as Prof Nutt and his supporters had us believe. Jonathan Sachs on the other hand did another good Thought for the Day on Friday, suggesting among other things we reduced our consumption by taking one day a week off. May not be an original idea, but it has supreme credentials. God knows what's best for the world.

As promised here is the letter I wrote to the Director of Public Prosecutions about assisted suicide, or more specifically about his interim guidelines. I very much hope that there is no back-door alteration of the law as it stands. That, it seems to me, would be undermining the primacy of Parliament.

I’d like to respond to your Interim policy for prosecutors in respect of cases of assisted suicide. Before enclosing my replies to the questionnaire, I have some important preliminary points to make, which I hope will bear as much weight as my proforma answers.

First, I suffer from Primary Lateral Sclerosis, an uncommon and protracted form of Motor Neurone Disease. This means I come into all three categories of ‘a terminal illness, a severe and incurable disability and a severe degenerative physical condition’ from which there is, at present, 'no possibility of recovery'. Although I am not convinced that this gives me a peculiar right to be listened to, it does at least mean that I am among those whom this redefinition of the law is intended to benefit.

Secondly, it seems to me that the Law Lords, from the best of motives, have put you in the invidious position of effectively redefining the law, which is not your role. Whatever policy guidelines you enunciate ought, I believe, to define the present law as it stands and not in fact redefine it in such a way to change its original intention - which would be to create a new law. I realise that what you are seeking to do is to define what ‘public interest’ is in such cases, but I think you have been set an impossible task in doing that without changing the law.

Thirdly, there is a danger, I feel, that in attempting to deal with a hard case we will end up with bad law. There is no doubt that end of life decisions for people like Debbie Purdy and myself are hard cases. But those are decisions for us to wrestle with. The role of this law, as I understand it, is to protect the vulnerable. Any erosion of this protection would be an undermining of the law. It seems to me the guidelines especially run into this danger by specifying victims with terminal illness, permanent disability or degenerative conditions as public interest factors against prosecution, while avoiding it well in specifying minority and special needs as factors in favour. Would it not be better to leave the absence of terminal illness, disability and degenerative conditions in the factors in favour alone, rather than give the appearance of inviting people to assist the suicide of people with those conditions?

Fourthly, I am concerned by the use of ‘compassion’ as a mitigating factor. My reservation is not with the concept, but with the problem of definition. Although it’s a profoundly noble virtue (‘suffering with’), it can easily be debased to mean ‘feeling sorry for’ and even ‘not being able to bear watching any longer’. ‘I acted wholly out of compassion,’ seems to me too easy a defence, which is very hard to disprove. Although it will be probably be genuine in nine cases out of ten, I can see it being used as a pretext by the unscrupulous abuser.

Fifthly, whilst I can see the logic of the close long-term relationship of the suspect to the victim being a mitigating factor against prosecution, most abuse, I believe, takes place within domestic contexts, where it is never witnessed. Again the overriding need for the law to protect the most vulnerable is in danger of being compromised. (Incidentally I should have thought that there is some internal inconsistency between factor 7 for and factor 6 against, as a spouse or partner will normally benefit financially.)

So far I realise I have been negative in my comments, but as my completed questionnaire shows I’m not totally so! I agree with some of the factors against, and all for. For instance, I strongly agree that any business or campaign with the aim of promoting euthanasia should know it runs the risk of prosecution if it actively involves itself in ending an individual’s life. I am sure no one is more aware than yourself of the minefield you’ve been instructed to walk through. I must say that I have admired the way that you and your predecessors have handled this painful issue. Personally I am sorry that your judicious discretion is not being left intact. I very much hope that the deterrent effect of the law as it stands is not diluted. I believe that it’s important that we signal the ultimate value of life in every way possible. I wish you well as you work out the final guidelines.

Friday, 4 December 2009

Can anyone tell me where this quotation from The Pilgrim's Progress comes from: “You have chosen the roughest road, but it leads straight to the hilltops”? And while I'm on the subject of looking for passages, someone showed me a quote comparing dying to being born a few years ago. I thought it was written by Henri Nouwen; or it might have been Jean Vanier. Has anyone come across it? Do let me know. I can't guarantee to acknowledge it in the next book, but I should be grateful.

Thursday, 3 December 2009

I'm thinking of changing this blog's format - just thought I'd warn you in advance, in case you get worried that you're on the wrong one. Just my restless nature, but the content will be from the same urbane digital pen!

In her comment, Mary asked whether I'd read The Shaming of the Strong. I haven't, but this morning we went to the Cornerstone Coffee Shop (with bookshop - isn't it such a civilised thing to be able to have coffee and at the same browse through books?) and ordered one. Because oddly a couple of days ago, I received a letter SENT 13 MONTHS AGO (I kid you not!) from Alison Davis, coordinator of No Less Human. Looking on their website yesterday, there it was again, Sarah Williams, Shaming of the Strong. So I thought, 'I'm going to buy that.' It's the account by Sarah of being told that the baby she was carrying had a genetic abnormality and would die at birth, and what she and her husband decided to do. I came across this quote from it:

'Everyone hurts. At some stage most people find that life does not deliver what we expect it would or should, and sometimes, worse still, life damages us directly. Although we may use our strength to control what happens to us, often we have little power to prevent difficult things happening. What we do have, however, is the power to choose how we respond. Everyone can choose to turn towards God and to love him in spite of the difficulty and injustice, even in the midst of a situation. . . . All we would have without him is the illusory freedom of our own strength to protect ourselves and our autonomy to isolate ourselves' (Sarah Williams, The Shaming of the Strong, p 171).

I'm reading a book by Henri Nouwen which is new to me, called Our Second Birth. He quotes something Pope John Paul II said in his first speech in the USA: 'Nobody is too poor to give, and nobody is too rich to receive.' I like the NOBODY.

Tuesday, 1 December 2009

Today I sent off my submission to the Director of Public Prosecutions about his interim guidelines for prosecution in cases relating to assisted suicide. I'm thinking of putting my letter on the blog, but think I'll wait until he's received it. I don't care much for the prevailing custom of 'leaking' reports before their official publication, or telling the press the contents of a letter before it's been sent or received. It seems rude to me.

It must be 1st December. Delia's on TV talking about getting ready for Christmas. I'm glad she's not shy about talking about the real meaning of Christmas. Her book 'A Feast for Advent' is still the best devotional book for these weeks up to Christmas.

I've had quite a productive day on the new book today - writing about the unconditional nature of God's love. I love George Herbert's poem, 'Love bade me welcome', but I noticed something I'd never seen before. You'll have to wait for the book to find out this original insight! Or you can try and work out what verse 3 is about!

By the way responses to the DPP's guidelines have to be in by 16th December. So please think about doing it yourselves soon. Google the Crown Prosecution Service and you'll find Consultations. It's important.